NDIS ignores science on early intervention for children with autism

The National Disability Insurance Agency (NDIA) is ignoring expert advice and existing government policy on early intervention for children with autism spectrum disorder (ASD). Instead, the NDIA adopted a generic and often inappropriate approach that does not address the distinct needs of children with ASD.

The Department of Health advised families* in 2006 that children with ASD need “best practice” intensive ASD-specific early intervention. Later, the Department of Social Security (formerly FaHCSIA) effectively asked ASD experts “are you sure … and what about just 'good' practice?”. The experts responded pretty much “Yep, we are sure … and 'good practice' isn't much different from 'best practice'” (links* to the report are here MS Word & PDF and the Guidelines for Good practice 2012 MS Word & PDF ... webpage here).

The expert advice is based solidly on science: there is a comprehensive review of the available research behind its conclusion. The reviews reached the same conclusion as other reviews from Australia and overseas (for example, USA here, here, here, here or here, California here, Canada here). Further, the ASD community strongly endorse the Commonwealth Government's and the experts' advice as shown in the 1000 hours campaign.

The NDIA adopted a “seven key principles” document that describes (link here) a generic model for early intervention that does not address the specific needs of children with ASD; it is predicated on “Principles and Practices in Natural Environments” and its content shows strong and uninformed prejudice against evidence-based best practice for ASD. All the document says about autism/ASD is …

1. Infants and toddlers learn best through every day experiences and interactions with familiar people in familiar contexts. … This principle DOES NOT look like this: … Assuming that certain children, such as those with autism, cannot learn from their families through naturally occurring learning opportunities

With the double negative removed, this Principle 1 claims “children with autism learn best from their families through naturally occurring learning opportunities”.

Now everyone who knows anything about ASD accepts there is a degree of truth in this. Many people who have some experience with ASD have stories such as this:

One day, a young man with severe ASD feels frustrated in his school class. To communicate his frustration, he picks up a chair and hurls it. It happens to fly though a window … the breaking glass makes an interesting noise.

There's lots more noise, talk and frantic people. Then his mum arrives. She takes him home … where it is calm and he can do stuff he feels comfortable about. He got what he wanted.

The young man quickly learned his lesson. The school taught him functional communication that gets him out of frustrating situations. Later, he was expelled from special school. His family, especially his mother, bears the consequences of the lessons that schools taught him: she no longer has a job, she is his full-time unpaid carer and due to his challenging behaviour (an outcome of his education) few disability service providers will accept him as a client.

So yes, there is a plethora of clear examples of children with ASD learning quickly and effectively “through naturally occurring learning opportunities”. It is not clear how this is “learn best”. It is not clear that what children with ASD learn this way is in the child's intended or desired curriculum; nor in the child's best interest longterm.

Recall that young children with ASD already spend more time with their family than children without a disability as their time in childcare is limited, and some young children with ASD are simply excluded; despite their extensive time in "naturalistic settings", children with ASD demonstrably do not “learn best through every day experiences and interactions with familiar people in familiar contexts”. If they did, they would not be diagnosed with ASD.

In recent presentations in the ACT, NDIA officials misinterpreted this Principle 1 material as meaning “all children with ASD can learn optimallyeverything they need to know in naturalistic settings”. This is fundamentally wrong in logic and factually incorrect.

Sadly, most children with ASD simply do not learn all the key skills that other children typically learn, skills that are essential for them to participate in their family and in other natural or mainstream settings. If they did “learn best through every day experiences and interactions with familiar people in familiar contexts”, then ASD would not really be a problem … and their education and labour force participation outcomes would be at least on par with other disability types.

This research evidence for "parent-mediated early intervention for young children with autism spectrum disorders (ASD)" is described in a review in the respected Cochrane Collaboration (see link):

the review finds sufficient evidence that the ways in which parents interacted with their children did change as intended. The review also suggests improvement in child outcomes such as understanding of language and severity of autism characteristics as a result of interventions delivered by parents. However, important outcomes such as other aspects of children's language, children's adaptive skills and parent stress did not show change.

The outcomes for the NDIA's early intervention model lack evidence that they are not as good as best practice for children with ASD.

It is incorrect and completely offensive to parents of children with ASD for the NDIA to claim (via their “seven key principles” document) that most parents of children with ASD do not already “engage [their] child in enjoyable learning opportunities that allow for frequent practice and mastery of emerging skills in natural settings” and use “principles of child learning, development, and family functioning”. The notion that early intervention for ASD should be about ensuring parents of children with ASD are just better parents was completely discredited decades ago. Research observed that most parents of children with ASD are at least as good as others at parenting non-ASD siblings.

NDIA officials are cruel, unprofessional and counter-productive to blame parents, mostly women, for a child's ASD. ASD is not due to poor parenting or relationship skills.

If only the NDIA's policy-makers were as good at making policy as parents of children with ASD are at parenting.

The NDIA is meant to be “person-centred” but the NDIA's model of early intervention is not person-centred; instead, it dumps children with ASD into mainstream or “naturalistic” settings whether the individual child is prepared/ready for such a setting or not, whether the setting is adequately prepared for a child with ASD or not. The NDIA's early intervention approach is based on ideology and dogma instead of on the needs of an individual child.

The “seven key principles” document claims/implies that all “Infants and toddlers [including children with ASD] learn best … in enjoyable learning opportunities that allow for frequent practice and mastery of emerging skills in natural settings” when clinician and parents agree skills do not emerge in children with ASD when they are “in natural settings”. Most children with ASD need their skills to be specifically taught in less-distracting (contrived/unnatural?) settings if the child is to have any chance at all to catch up with typically developing peers. Then come a crucial part of the program: the child needs to practice/generalise skills, once learned (emerged), in mainstream or naturalistic settings.

The NDIA's preferred model rejects curriculum requirements to teach “specific skills in a specific order”. Apparently, they think skills are without prerequisites: this suggests a child will learn to recognise a 2D picture or a text representation of an apple … without the child first knowing what an apple is. Any such claim demands evidence … which unfortunately is absent so far.

The NDIA's preferred model decries “massed trial and repetition” … implying that these are never enjoyable for “the child”. Clearly, those who wrote this material spent no time observing children with ASD whose diagnostic criteria specifically list repetitive behaviour as a feature. Most children with ASD are comfortable with, even prefer, “massed trial and repetition”. Besides, “massed trial and repetition” is essential for mastery of any non-trivial physical skill including the development of much sporting prowess.

Most of the NDIA's “seven key principles” document has extensive misunderstandings and misrepresentations about children with ASD. The NDIA needs to do much better than this if it intends to improve outcomes for people with ASD.

The NDIA apparently has the support of the ACT Minister for Disability who also disregards scientific opinion on early intervention for children with ASD. The ACT Minister is on the record saying ...

MS BURCH: We seem to be concentrating on a model of care that provides 20 hours of intense intervention and I think it is the ABA model. There is no jurisdiction—as I understand, no state or territory funds that model of care. I know it is a model of care that is a particular interest of a particular stakeholder, but no state or territory funds that model of care.

The ACT Minister is wrong on several counts.

The 1000 hours campaign (about 20 hours per week of beat practice early intervention) is not just “the ABA (Applied Behaviour Analysis) model”, it is about individualised (person-centred, if you like) intensive ASD-specific programs using a variety of evidence-based practices (see MS Word & PDF) for children with ASD;

numerous jurisdictions, for example New York, Wisconsin, etc. invest in best practice early intervention for children with ASD. Even the ACT Government funded best practice early intervention at its North Ainslie Primary School autism-specific Learning Support Unit for 4½ years from July 1998.

the model of 20+ hours per week of intensive individualised ASD-specific early intervention is not just “a particular interest of a particular stakeholder”, it is the accepted view of both ASD experts and the wider ASD community in Australia, and the recommendation of the Commonwealth Government since 2006.

Mr Bonyhady, Chair of the NDIA Board, on 14/5/2014 told the Joint Standing Committee on the National Disability Insurance Scheme (click here)

“The origins of this scheme are accident compensation schemes. In accident compensation schemes, there are three types of catastrophic injury—spinal cord, brain and burns. There are now, as a result of the long history of the operation of those accident compensation schemes, clear links between the functional impairments that arise from the different levels of those types of injuries and the sorts of support packages that are reasonable and necessary. We are building that sort of information now for cerebral palsy, for autism, for spina bifida, for multiple sclerosis, for motor neurone disease—all the other types of disabilities and, particularly, the functional impairments that arise from those conditions—as part of building this scheme.”

The latest NDIS Quarterly Report describing progress on the NDIS until 31/3/2014 shows 24% of NDIS participants list their primary disability as “autism” (the previous NDIS quarterly reports showed no participants with “autism”).

Apparently, “autism” is now the largest primary disability type in the NDIS. Yet, the NDIA has not discussed properly services and supports for people affected by ASD with relevant stakeholder organisations such as that grassroots national group representing NDIS participants affected by ASD (there were a couple of audiences – not discussions – with one or two NDIA media people) and Assistant Minister Fifield refuses to meet ASD stakeholders (an audience with an adviser to the Assistant Minister is just a put off, 'chinese whispers' at best). Instead, the NDIA is just starting to 'build that sort of information now' about disability services and supports for “autism”, its largest distinct disability type, without even consulting appropriate stakeholders.

The NDIA cannot discover the science relating to ASD through its information building processes. It must talk to stakeholders if it hopes to develop any real understanding of the needs of people affected by ASD in any reasonable time scale. It needs to understand that rapidly increasing ASD diagnoses (click here or here) and the lack of a suitable workforce (click here) are major issues that it must address immediately.

NDIS eligibility criteria relating to autism/ASD remain gobbledygook (these documents can be downloaded from links below) despite several revisions of the “access documents” since the NDIA was told their criteria relating to ASD do not make sense.

As well as ignoring relevant science, the NDIA also ignores the considerable social and fiscal issues relating to ASD.

The Commonwealth Government refuses to fund systemic advocacy for ASD, the largest participant group in the NDIS so far, or to include a representative peak body for ASD in its National Disability Peak Bodies arrangements.

Outcomes for the rapidly growing number of people affected by ASD, most of whom are severely of profoundly affected, continue to be abysmal (see the ABS autism reports from 2012 and 2009). The response from Governments to such abysmal outcomes in education and employment for people with ASD is less than a shrug of their shoulder.

* since this article was published, the Government removed (or hid) the valuable advice it previously provided for familes from its website. These include essential information for families of children who are newly diagnosed with autism so A4 ensure they are available of its website; you can download them from this page http://a4.org.au/node/965.